Jenny’s Journal

We recently had a phone call with our wonderful long-term supporter, Jenny, chatting about so many aspects of hers and her daughter Harper’s neuroblastoma journey.

There were so many honest, powerful and beautifully moving things discussed that we knew we had to open the conversation up to more of our wonderful community.

So, we’re delighted to introduce our very first Parent Blog - re-introducing Jenny, Harper’s mum, as she shares her story, her experiences and the realities of navigating life alongside neuroblastoma. 

We hope you’ll join us for this incredibly honest and powerful journey.

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• It has been a journey for you all, how have things been since you shared Harper’s story with us?

  Since we last spoke Harper finished UK protocol treatment in July 2024, and we then accessed DFMO at Penn State in Hershey Pennsylvania. We did two trips to America, both very different, but so powerful. We stayed at Ronald McDonald house on one of the visits and as emotional as it was. We met some incredible children, some like Harper, but it was so heart breaking at the same time.

  Harper is NED which we are very grateful for. She has regular catecholamine tests and ultrasounds, so all are non-invasive to make sure she remains that way. The whole journey has been so emotional, with a lot of ups and downs, but we are one of the lucky ones. I have always said I will write a book one day to share Harper’s journey with the hope it can help others. In the meantime, I try to answer as many questions as I can on forums from parents and I am in the middle of doing a scrap book for Harper, so when she is older she doesn’t forget her journey.

• How is Harper and her siblings now?

  Harper finished DFMO this July! She has started school, goes to dance and gymnastics on a weekend and is genuinely the happiest little girl.

  She has side effects from her treatment, she is deaf, forever having ear infections, and wears glasses. She also recently verbalised that sometimes her legs can hurt, but she is here, and we are so so fortunate.

  Her siblings are doing good. They were all incredible throughout her treatment, not one of them had a day off! When she finished UK treatment, we noticed areas where they were struggling, and have accessed support for this, but at the moment they are all doing well.

• 3 years on, what would you say to another parent who has just received a diagnosis?

  Take each day as it comes, no journey is ever the same. Lean on others for support if you are able and try to find some positives in each day. It's hard, and some seem harder than others, but someone once said to us, if you get yourself into the mindset that everyday is a hospital day then any time at home is a bonus.

  Always have that bag packed and make sure it has yours and your child’s favourite treats. I always made sure I had a mug, and a pillow too as the hospital ones are not the best!

  Try to get comfortable with being uncomfortable. I found it better to speak to other parents and the nurses, as it gave me some normality, whereas Adam preferred to keep himself to himself. However you get through, it is ok.

“Lean on others for support if you are able and try to find some positives in each day.”

• What advice would you give to parents looking at the prospect of going abroad for treatment?

  That is a difficult one as I know a lot of support has been cut. The treatment in America was great, very efficient, and welcoming. If you are able to go for treatment make sure you research it to know what is expected and the length of time you need to be there.

  I know different hospitals have different rules. It can be expensive to go, but Ronald McDonald is incredible, especially in Hershey. They made us feel at home and had so much going on for families who were not able to go anywhere other than to the hospital. Reach out to other parents and find any little tricks that can keep costs down.

• What does Childhood Cancer awareness month mean to you?

  I am so passionate about this! Getting our children recognised for the amazing, strong, determined, resilient fighters they are. It really upsets me that they are not recognised in the same way as someone who has fought a different type of cancer.

  I recently met someone who didn’t realise that our children are treated with the same chemotherapies as adults! Our children deserve so much more, they deserve to be remembered, they deserve to be celebrated.

  One thing I want is to raise awareness, and have the whole country Go Gold in September, schools, businesses, the lot - one goal I have is to have the gold pins sold at tills in supermarkets.

“Our children deserve so much more, they deserve to be remembered, they deserve to be celebrated.”

• What has been one thing that has surprised you throughout your whole journey?

  How much joy you can find in the most difficult of times.

  The bond both Adam and I have with Harper is incredible, this is not the surprising thing, but we made so many amazing memories, genuinely happy memories which is crazy with what we were facing.

“we made so many amazing memories, genuinely happy memories which is crazy with what we were facing.”

• What has made you most proud?

  Harper is what I am most proud of.

  She is so strong, so happy, and never seems phased. She has so much empathy, even when we were finding things so hard, she would give us a kiss, or a cuddle, touch our hand or even a look.

  She is the same at school, children who sometimes need a little extra, she is there like a little old woman trying to help, when you would think it would be her needing the help.

• What has disappointed you?

  That is a difficult one! I am sad about a lot of things including the lack of financial support for parents who are newly diagnosed. We were fortunate with our employers, but this is not the case for so many.

  
  I am disappointed that medical professionals can take so long to listen to parents. There were so many families who had late diagnosis through front line professionals not listening to them. I would love for front line medical professionals to listen more. I understand that some of the signs can be similar to other common illnesses, but Harper’s eye had moved up out of alignment and was classed as a ‘red flag’ and even though it was unintentional, it was still missed.

• What are you focusing on now?

  We have just got married after putting off the wedding whilst Harper was in treatment, So we are now enjoying making memories and living in the moment, something I learnt whilst going through treatment with Harper.

  I am training as a therapist to be able to volunteer and provide other parents and families support through therapy as there isn’t much around.

  I also want to help in getting our children recognised, something that is slow growing at the moment through Project Golden Child. An initiative I started to hopefully raise awareness and show how incredible our children are.

“Neuroblastoma UK have always been so supportive of us as a family, inclusive and always there to offer support.”

• And finally, you recently became a Friend of Neuroblastoma UK, what does it mean to you to support our charity in this way?

  I will always try to do something to help and give back. Neuroblastoma UK have always been so supportive of us as a family, inclusive and always there to offer support.

  I want to be able to help other people like me. I was fortunate enough to build a good support network, it's now my turn to be able to help others.

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Thank you so much to Jenny for sharing her experience and thoughts.

If you are a parent at the beginning of a neuroblastoma diagnosis check out our Navigating a Neuroblastoma Diagnosis resources.